Sticky Blood Explained

[TJSTICKYBLOOD]

So on Friday I attended the book launch , it was an amazing event and very educational with questions from the audience answered by Professor Hughes. I met some lovely people and I find it’s very therapeutic to mix and meet people that understand what you are going through. Additionally to that the wine (helps thin my blood) and canapés were amazing. I recommend anyone that has the opportunity to attend these type of events do so.

[MaryF Administrator]

Thanks, I enjoyed the event also. I really look forward to seeing your book progress, glad you and Kay have now met properly. MaryF

[Ash0507]

Must have been good learning new things. I don't know much about aps but slowly researching it just don't know where to look to learn about it

[MaryF Administrator in reply to Ash0507]

The charity website carries a lot of useful information, and we also learn off each other on this forum: ghic.world/ It is important to have the right medical consultant involved in your care and this will also help your GP. MaryF

[Ash0507 in reply to MaryF]

I'm going to talk to my gp today about referal to st Thomas hospital in London as every one who goes there saying they have an excellent professor there so can but try

[MaryF Administrator in reply to Ash0507]

I see Prof Hunt, she is very, but we are lucky to have many good medical doctors now in the UK, but of course London has many, best of luck. MaryF

[Ash0507 in reply to MaryF]

Yes that is who I'm going to be asking for if he agrees I need to know what questions would be good and write them down. I just want to get better and warfarin isn't helping and no way going back to nothing which she suggested i do, I can't do that again it was awful

[Ash0507 in reply to MaryF]

Had a good chat with my gp and he is going to find her and refer me as had trouble getting her on his system. He said I'm one of the worst cases he's seen as it's attacked my brain and bowel and thinks probably more places. I literally act like I have dementia and i hate it, I forget half way through a discussion what we are talking about. Is that normal of aps? He thinks I also have fibro just with a cause of aps which is double whammy really. I'm upset all the time as I can see me getting worse just nothing to stop it.

What's the worse case scenario? As in can it kill you in time or cause problems that it would? I'm scared tbb

[MaryF Administrator in reply to Ash0507]

Your worst case scenario will calm right down with the right medical intervention, great progress you have made with this, well done. MaryF

[Ash0507 in reply to MaryF]

Thank you, I'm currently floored with a headache. Hope fully it will pass soon when I sleep tonight. I hope being refered if he can find her will help

[altar]

Hi,

How do you find out about these events?

It sounds really interesting and as I am recently diagnosed I want to find out as much as I can.

Thanks

[MaryF Administrator in reply to altar]

Hi, the events will be put on the front of our website, and later also later in our 'events section' being built now: ghic.world/ Also our Facebook page will carry the information: Our next event is on March 15th in March, another Patient's Day Meeting.

MaryF

[altar in reply to MaryF]

That's great, thanks Mary, I hope to be there!

[MaryF Administrator in reply to altar]

Great, I will put a post on here once the event is on eventbrite, thank you. MaryF